Tag: migraines

It’s not my fault I have Lyme Disease

It’s not!  It’s really not my fault!  I don’t even know how or when I got it.  But I feel like it is my fault because I have a disease that most doctors don’t believe exists.  It’s not my fault that doctors are uneducated in Chronic Lyme Disease or Post-Treatment Lyme Disease, Co-Infections and all the other things that come with it.  But it’s really not fair to treat someone so poorly because they have it.  I would be treated so much better if I had Cancer.  Lyme Disease is much worse than Cancer!  You are thinking,…NO SHE’S CRAZY!  But it’s true.  You CAN die from Lyme Disease.   Yes, that is true.  It’s a scary disease.  So let’s compare Breast Cancer to Lyme Disease.

American Cancer Society   – The American Cancer Society’s estimates for breast cancer in the United States for 2016 are:

  • About 246,660 new cases of invasive breast cancer will be diagnosed in women.
  • About 61,000 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 40,450 women will die from breast cancer.

In 2013 the CDC updated it’s statistics stating that they now estimate over 300,000 new cases of lyme disease each year.  And those are just the reported cases.  Unfortunately, due to the lack of education of medical doctors thousands and thousands of people are misdiagnosed.  Check out these links:

LymeDisease.org

CDC

Bay Area Lyme Foundation

The number of people that die from Lyme Disease is not clearly known because most cases of Lyme are misdiagnosed as something else like, Fibromyalgia, ALS, MS, RA, CFS, Alzheimers, Crohns, Psychiatric Disorders, any auto-immune disorder and numerous others diseases.  That’s why it’s called The Great Imitator”  Check out New York Times 1993,  Under Our Skin Article 2012,  and see Dr. Horowitz, MD  and many other books, books and more books.

If I had Cancer no one would even think that I was faking the crippling pain and nausea.  No one would ever questions that I wasn’t suffering.  No one would ever think I was making it all up.  No one would treat me like an addict just seeking drugs.  Seriously, think about it.  No one!  Not Doctors—Not Friends—Not Family—Not Co-Workers—No One!  Have you ever doubted anyone when they told you they had or have Cancer.  No, I didn’t think so.  Have you ever doubted anyone when they got sicker while doing chemo treatments.  No, I didn’t think so.  That’s why Lyme is worse.  There is NO support!  There is only inadequate medical care and uneducated and unsupportive doctors.

So here’s to all those medical professionals and others who think I have something else besides Lyme. Or think that Lyme is easily treated.  Or think I make up this pain.

  1. I have been to numerous doctors before seeing a Lyme Literate MD
  2. I have had doctors rule out other things you think I have.
  3. No, the lab that did my lyme testing is not fake.
  4. I have spent a year educating myself about Lyme Disease and I know a lot more about it than you do.
  5. My pain is real!  I had a life and a career before getting daily migraines 21 years ago.  It’s not my fault my body is on fire and no one has figured it out yet.
  6. I have tried many daily drugs to lessen my pain and they DO NOT WORK so I need pain meds.
  7. I look fine to you because I fake it!  I lie about how I am doing because most people really don’t care when they ask “How’s it going?”  or “How are you?”  We all know that is just a common meaningless gesture.
  8. I am not an addict seeking drugs.  I am crippled and can barely walk without pain meds.  I feel like a “Walker” because I run into walls in my house because I am so feeble and ready to collapse most of the time.
  9. Because Lyme comprises my immune system I have many other illnesses but I still have LYME!
  10. Most treatments are not covered my insurance because the CDC determines treatment courses and they believe one course of antibiotics is enough.  Lyme is not easily treated and cured.  It’s complicated!

As you can see the number of reported cases of Breast Cancer and Lyme Disease are around the same each year.  But remember many cases of Lyme are not reported because they are misdiagnosed.  Have you read about Kris Kristofferson?

Here’s an interesting article that explains some of the controversy of Chronic Lyme

 Here is another good article about the controversy of Chronic Lyme

So to those medical professionals who still don’t think I have Lyme Disease, what do you suggest I do?

  • Do you think I should start over and re-do tests that came back negative?
  • Do you think I should just pick a diagnosis that fits in your box?
  • What do you expect me to do when I receive negative test results for the things you think I have?
  • What do you expect me to do when the pain is real and I’m told it’s not and that I need psychiatric meds?
  • What do you expect me to do when I am crippled with pain and no one will help me?
  • What do I do when the only tests that come back positive are for infections called lyme disease and lyme disease co-infections.

Medical Professionals:

  • Please get educated!
  • Please stop treating me like a drug addict.
  • Please don’t rule out Lyme Disease as a diagnosis for other patients and send them to a LLMD.  Don’t do the testing yourself.  You don’t know what you are doing!

I wish everyone could spend ONE day in my shoes to develop some compassion.  You would also begin to understand what fatigue and pain really is and learn that most days I feel like I am going to die.  Because I can tell you you have NO CLUE!

 

Beautiful Song by Marina Morgan 

Read some of the Myths of Lyme Disease

Lyme is a huge epidemic and the denial by our government is killing people like me.

I have Lyme Disease Educational DVD’s I am happy to lend to anyone interested

 

 

 

 

Possible Lyme Disease Symptoms

I’ve been reading a lot about Lyme disease and came across a list of  possible symptoms.  This is shocking!

“Persistent swollen glands, sore throat, fevers, chills, sore soles, especially in the morning, joint pain and/or swelling in fingers, toes, ankles, wrists, knees, elbows, hips, shoulders, numbness in the arms and/or legs, unexplained back pain, stiffness of the joints and back, muscle pain and cramps, obvious muscle weakness, twitching of the face or other muscles, confusion, difficulty thinking, difficulty with concentration, focus and reading, problem absorbing new information, searching for words and names, forgetfulness, poor short term memory, poor attention, disorientation: getting lost, going to wrong places, speech errors, such as wrong words or misspeaking, mood swings, irritability, depression, anxiety, panic attacks, psychosis (hallucinations, delusions), paranoia, bipolar, tremor, seizures, headaches, light and sound sensitivity, double, or blurry vision with floaters, ear pain, hearing problems, such as buzzing, ringing or decreased hearing, increased motion sickness, vertigo, spinning, off balance, “tippy” feeling, lightheadedness, wooziness, unavoidable need to sit or lie, fainting, flu-like feeling, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis-Bell&rsquos Palsy, dental pain, TMJ, neck creaks and cracks, stiffness, neck pain, fatigue, tiredness, poor stamina, insomnia, fractionated sleep, early awakening, excessive night time sleep, napping during the day, unexplained weight gain or loss, unexplained hair loss, pain in genital area, unexplained menstrual irregularity or milk production, breast pain, irritable bladder, erectile dysfunction, loss of libido, queasy stomach, nausea, heartburn, stomach pain, constipation, diarrhea, constipation alternating with diarrhea, low abdominal pain, cramps, heart murmur or valve prolapse, heart palpitations or skips, “Heart block” on EKG, chest wall pain or sore ribs, head congestion, breathlessness, “air hunger,” unexplained chronic cough, night sweats, exaggerated symptoms or worse hangover from alcohol, skin rashes, conjunctivitis (pinkeye), herpes, Zoster/Shingles.”

#ChronicPainSucks: Part III

In July my condition became a lot worse and I was living with level 9-10 pain every day.  The pain scale goes from 1 to 10 with 10 being the worst pain.  I was having a hard time functioning.  The pain was so severe I felt crippled.  By August I felt I would be in a wheelchair soon if I didn’t figure out what was was wrong.  Notice I said “if I didn’t figure out what was wrong”.  Yes, I had to figure it out myself.

I  was do for a visit with my Psychiatrist (I’m not counting her as one of the 5 doctors’) so I went to see her.  With 20 years of being in a dark room with migraines you naturally get depressed and become severely vitamin D deficient.  After my implant I started going off the antidepressants and was down to a small dose of Cymbalta.   At one point I was on 7 different medications.  It becomes so difficult to manage that many medications and it’s dangerous because it’s easy to make mistakes.  Just ask my husband~ And ask my friend Colleen how fun it is when Kim forgets to bring her medications on vacation.

Because I was so frustrated, mad and upset that no doctor was helping me, she said I needed a mood stabilizer.  WTF?  So this is how it always works….throw drugs at a problem.  Our medical system in the U.S. is ruled by the drug companies.  Pharmaceutical companies care only about the money and not helping patients get better.  Doctors just want to treat symptoms instead of figuring out what is wrong.  In fact, they treat side effects of a medication with another medication.  Have you seen the commercials for a medication to take to help opioid induced constipation?    So instead of adding fiber to your diet they recommend a drug.   I refused to accept another drug from the psychiatrist.  And, I am no longer seeing a psychiatrist.  I didn’t need a mood stabilizer.  I needed answers!

Back to my PCP at the Palo Alto Medical Foundation

My PCP has been amazing.  She listens to me and has helped me through many years of migraines.    She suggested I move on to the Stanford Pain Center.  Since I have been a patient with them in the past and didn’t really have a good experience I decided to find someone outside of Stanford.  My back up plan was to go to Stanford.  I googled pain doctors in my area and thankfully I found Remedy Medical Group.  And lucky for me they have an office in Redwood City.

To be Continued……

Group Exercise Classes – from a former instructor

The article attached thinks  “indoor cycling could help better manage migraines”.  I agree exercising can help chronic pain but having loud music is really difficult when you have a migraine.  I was a fitness instructor for 14 years and had to reduce the number and type of classes I was teaching because I always had so much pain in my head.  I loved the indoor cycling but was constantly calling for a sub to teach my classes.  Have any of you tried Zumba?  I don’t know why but it is the class with the loudest music.  I love group classes but even with no pain in my head, I’m still sensitive to loud pounding music.  Some gyms even have disco balls or strobe lights in cycling rooms.  Why?  I wonder if the Swedish study in this article had the music lower for the patients.  Probably.

http://www.wral.com/indoor-cycling-could-help-better-manage-migraines/14479586/

Chronic Pain and Depression

When my migraines first started in 1995 I began experiencing depression.  I never felt depressed before that.  I had no idea at the time that most people with chronic pain have depression.  I went to my primary care doctor and got Fioricet for the pain and Prozac for the depression.

I remember the first time I took Fioricet. I had no idea it had caffeine in it.  It was such a nightmare!  It didn’t help my level 10 exploding head pain AND I was wide awake.  I didn’t even think of going to the emergency room.  I just remember crying.  [What is Fioricet?  Per drugs.com:  Fioricet contains a combination of acetaminophen, butalbital, and caffeine. Acetaminophen is a pain reliever and fever reducer. Butalbital is in a group of drugs called barbiturates. It relaxes muscle contractions involved in a tension headache. Caffeine is a central nervous system stimulant. It relaxes muscle contractions in blood vessels to improve blood flow.]

I remember Prozac too: [Per drugwatch.com:  Patients taking Prozac may experience a host of side effects, including sexual dysfunction, dry mouth, nausea, headache, diarrhea, nervousness, restlessness, agitation, increased sweating, weight gain, insomnia and drowsiness.]  Strange how so many drugs have headaches as side effects.  I only took it for a few months and then switched to Zoloft.  [Per drugwatch.com:  Minor side effects of Zoloft that typically decrease after the first or second week of use include:, Nause, Diarrhea, Weight loss or gain, Increased sweating, Dizziness, Sleepiness or insomnia, Tremor, Dry mouth, Headache, Restlessness, Suicidal Thoughts, Sexual Dysfunction.  I didn’t stay on Zoloft very long either.

So if you are feeling depressed from all the head pain or just in general.  YOU ARE NOT ALONE

Check out NAMI, National Alliance on Mental Illiness.  

http://www.nami.org/Learn-More/Mental-Health-Conditions/Depression/Overview